Then and now
Seven years ago following a terrifying physical examination by a callous neuro specialist I was told that the small, infrequent shake in my right hand which had manifest post shoulder surgery was an outward sign of Parkinson’s Disease (PD), a degenerative brain disease with no cure. At that time I was not given any guidance as to how this would affect my life and left the consulting room alone and in floods of tears. Some months later I was advised that the new diagnosis was Multiple System Atrophy, a Parkinson’s Plus disease with a greatly reduced life expectancy and I should go and build memories with my family to make the most of the time remaining. When pushed the specialist thought that my life would be changed within three to four years.
And he was not incorrect.
But not in the way he imagined.
To be honest, I was not a well bunny and was completely freaked out. I was a pain to live with and become completely obsessed – a PD trait and a medication side effect. My body image fell through the floor. Following instructions for the first time in a long time I travelled with my two eldest children halfway around the world… at different times and in opposite directions. I spent time in a locked hospital ward and was rescued by the kindest people in the world. I went to my son’s wedding wearing a caliper because my foot would not behave in the way intended. Bridges were built with my youngest child. I packed up and moved to a multicultural area of central Bristol surrounded by trees and good neighbours. I performed Burlesque which did wonders for my body image. Got a dog and a boyfriend and we go on adventures together. I discovered and practice Tai Chi which is improving my balance and promotes mindfulness. I spend many hours drawing which allows me to be completely absorbed and reduces my symptoms temporarily and I have also re-discovered designing and making with cloth, card and paper. My life has changed completely.
I’m going to be 60 in a few weeks so my children have organised a surprise party (after much prompting) and I am to be taken to foreign parts by my boyfriend to celebrate reaching such an improbable age and I thank them all. I cried in the street on my 25th birthday, I thought that my life was over… I was SOOO old. There are times now when I feel really useless, although most of the time I just get on with it and I refuse to wear purple just yet. Currently I am unable to walk far on my own; have debilitating social anxiety because I frequently fail to form sentences or follow discussions; I have a blank mask-like face and squirm and wriggle with dyskinesia or cramp up with dystonia; I sleep poorly with mild sleep apnea; I eat irregularly and support the food groups that include tea, chocolate and hummus; I have developed Raynauds in both hands and feet on top of the myriad of unpleasant side effects from my medications; I have massive panic attacks lasting in waves for days which can be triggered by nothing I can pinpoint and struggle for weeks to recover from minor ailments.
But I’m not dead or dribbling in a corner quite yet. I may still have MSA. Realistically if anyone can be bothered to chop my brain up when I’m dead then you’ll know. Until then my active life expectancy is guesswork. I have watched PD friends deteriorate before me over relatively short periods of time and have no delusions that I too shall be following that well trodden path. If the quacks are right I’ve got another couple of years before I have to seriously consider my future on this earth. I never expected to get this far. I have my will and my funeral arrangements all written out and easily accessible and have the money set aside to pay the crematorium fees. My specialist advises me that I am in the latter stages of PD and am not a candidate for Deep Brain Stimulation, but might benefit from a pump which will supply me with a continuous supply of a drug called a dopamine agonist which may increase both my obsessive behaviour and my PD symptoms, may cause permanent changes to my skin unless I rub those damn nodules every night with the cream I used when changing my children’s nappies all those years ago and may give me painful 4 hour erections (sorry, forgot, don’t have one of those). I have a test at the end of the month to assess my suitability. I’ll let you know.
It has been a very long time since I posted on my blog, apologies for the lists. I intend to try and post more regularly from now on. I would be very interested in your comments whether you have PD, MSA or not..